Wednesday, March 30, 2011

Lupus LOCKdown: Hair loss tricks and tips

So I call this post "Lupus LOCKdown: Let no strand fall behind."

(I know, I know - that corny sense of humor of mine keeps you guys coming back post after post.) As promised, here are my go-to's when my hair is falling out:

1) Wash your hair as few times a week as possible. (If there's not much there, it's not getting that dirty, right?) When you do wash or condition...just pat on and gently wash out. A light, gingerly touch is key here. And go easy on the hair towel. Just pat dry...and let those stringy strands air dry on their own. At least they'll stay in that way!

2) Put your hair up, anyway you can, so that you don't see the thinning wisps that remain every time you catch a glimpse of yourself in the mirror.

3) Accessorize. Add earrings, necklaces, scarves and the like, anything that draws attention (yours and others!) to something other than your hair.

4) Add a hat to your look. There was a time when I didn't go anywhere without a hat on. It just covers up everything you need to cover up. And I'm not talking about a baseball cap day in and day out. Think cute, little numbers that add a bit of pizazz to your outfit.

5) Go short. Just cut it off, and start from scratch, and then watch your face light up from the fresh new start you've given yourself. (Note - I've done a complete overhaul of my hair only one time, and a semi-overhaul one other time. In the case of my three other hair loss episodes, the degree of hair loss didn't warrant a short new 'do. So use a bit of caution before you snip. Perhaps consult a good friend before cutting. If the loss really isn't that may just need to wait it out.)

6) Consult a dermatologist. (I waited too long on this one. Feel free to learn from my mistakes, and just make the appointment. If anything can be done, seize the opportunity!)

7) Consider getting a wig, or a hair piece. Whatever gives you coverage, and makes you feel good about yourself...I say do it!

Any other tips? Feel free to share in the comments or via email. I'd love to hear from you!

Monday, March 28, 2011

Lupus hair loss: managing the fallout

Remember that hair loss I mentioned a few months ago, the fallout that I thought was subsiding? Well...I was being optimistic. I thought it was on its way out (the episode, not the hair), but I'm still losing strands by the dozen. It's okay, though. This, too, shall pass. But man, can it be unsettling.

Speaking as someone who's lost a good portion of her hair multiple times (I've lost at least 40% of the volume four times, and at least 70% of the volume one additional time), I've assessed that there are several stages involved in hair loss. Here's how I would describe them:

Stage 1: "Wow. I think I'm losing my hair. That's kinda crazy." In this beginning stage, you're almost in awe of the loss. It's never good to lose your hair, of course, but the loss is so minimal, you're just kind of surprised that this lupus symptom is actually happening to you, just like it says it will in all of the lupus books. Still, you openly talk about the loss...kind of like it's good party conversation. It's not noticeable to anyone but you, so you don't give it a second thought, or at least not much of one. You think you might even just be blowing the whole thing out of proportion - optimistically thinking that the strands will cease to fall after a week or two.

Stage 2: "Hmmm. I'm really losing a lot of hair. Like, a lot." This is the stage where you can confirm, without a doubt, that hair loss is taking place. You don't know what's causing it, but you would like it to stop. Now. It's still not noticeable to anyone - maybe your spouse or close friends - but you know the volume is rapidly decreasing. It's no longer a topic of conversation - although you may consult a few close friends to see if they've ever experienced anything like this.

Stage 3: "Okay. This hair loss is not cool." I don't like this stage. It's the stage right before the stage where you decide to proactively deal with the loss. Until then, you're just kind of holding on for dear life. Literally. It's as if you can feel each and every strand falling from your head, and you do whatever you can to keep each one in its place. You no longer mindlessly fidget with your hair, and you don't tousle mid-day to make it look fuller or bouncier. You just try to keep your hair as still as possible in order to minimize the loss. At this point, you don't talk about your hair, and you don't want anyone else to mention your lovely locks (or lack thereof) either.

Stage 4: "Yes, those are bald spots. And yes, I'm losing my hair. ..but it's okay. I'm dealing with it." This is the stage where you find out what you're really made of. Although you may think this is the worst stage of all, it's not. As far as the bare spots on your head - sure, it's not going to get much worse than this. But as far as your mindset, and your ability to cope with and manage the fallout - things are looking up.

So you're losing your hair? Yes, it's upsetting and frustrating, and you wish it weren't happening to you. But you realize that you're more than just a few strands of hair on your head. Your identity isn't wrapped up in your appearance, and your long wavy hair (or short curly 'do) doesn't define you. It can't; currently, you don't have much hair to speak of, and yet you're still here, present and accounted for. You're still mustering up the strength and courage to deal with your hair loss, and with lupus, for that matter, one strand at a time.

This is about the time you look yourself in the mirror, admit that your hair situation is pretty grim, but decide that you're a big enough girl to deal with it. You've accepted this as a manifestation of your illness, one that you can't control, but one that isn't going to get the best of you. Even though you don't know how or when it will get better, you're going to hold your head up high, and believe that one day, that head will once again be full of hair.

Maybe there's even a little new hair growth on which you can and should pin your hopes. Hair does grow. It just takes time. So in that meantime, it's time to pull out all the stops. You cut way back on your shampoo days, you forgo the hair dryer and the straightening brush (because that's, like, the ultimate hair loss no-no), and you resort to barrettes, hair bands and anything else that keeps those remaining wisps under control. Just by waking up every morning and facing those bald spots, you're reminding yourself that lupus isn't going to win. Not now, now ever. You're stronger and more resilient...even in spite of your hair loss.

A friend and I were recently discussing the ol' hair loss issue, and I was reminded of all of the things that I've done in the past to manage the fallout, this most recent episode as well as in hair losses past. Good news is that I currently have spiky new growth at least an inch long over most of my head, so I know new hair is on its way. It's a real pain to contend with that short, stubby stuff as it's growing in...but I'm not complaining. New hair is new hair, plain and simple!

On Wednesday, I'll give you my short list of to-do's when I'm faced with the fallout, most of which I've employed myself over the past few weeks. If you have any additional tricks or tips - let me know. I'll be sure to add them!

Friday, March 25, 2011

Lupus Workshop on 3/26 - it's back to Baltimore, I go!

Join me this Saturday (tomorrow) for the LFA DMV's Dealing with Lupus & Disability Issues Workshop, featuring Sharon Christie, Attorney at Law (and nurse, too!) She knows the law, she knows medicine - what a super combination!

It's sure to be a great session. Registration for the event begins at 10am, and the workshop will begin at 10:15am, running until 12pm. All details are below - feel free to pre-register for the event here. LFA DMV provides their events free of charge, so be sure to come by. And make sure you stop by my book table. I'd love to say hi!

WHAT: Lupus and Disability Issues Workshop
WHEN: Saturday, March 26th, 10am Registration, 10:15 - 12pm Program
WHERE: Enoch Pratt Library-Light Street Branch
1251 Light Street Baltimore, MD 21230

* Parking is available behind the library (limited space), on the street and at the West St. Parking Garage.

See you there! (And if you don't get a chance to register, come by anyway. We'd love to have you.)

Wednesday, March 23, 2011

The D.C. Walk for Lupus Now 2011 is here!

Spring is here - and that means that the Lupus Foundation of America's D.C. Walk for Lupus Now 2011 is just around the corner. My fabulous lupus support group has formed a team, and we are accepting donations from those of you interested in supporting the cause.

When is the walk?
The 5th Annual DC Walk for Lupus Now - 2011 will be held on Saturday, April 16th, 2011. I'll be there - look for the stack of books and my 8-foot post-up stand. You won't miss me!

The walk starts at 9:30am, with walkers heading down Pennsylvania Avenue, NW starting at 13th street down to the Capital and back. The walk goes on, rain or shine! Registration begins at 8:30 a.m. and the walk starts at 9:30 a.m. Festivities to conclude by 1:00 pm.

How can you donate to the Walk?
Feel free to click here to go to my donation page, or check out the team's main donation page. You can find my name there, too, if you'd like. The team and I would love your support!

How does your donation help?

The goal of my local chapter of the Lupus Foundation of America (LFA-DMV) is to improve the quality of life of lupus patients through education, community outreach services, and hope for better treatment through research. With your donation you become a member of the LFA-DMV, joining the thousands of lupus patients, their families and friends, and the medical community across the country working towards the eradication of lupus. It is through the financial support of its members that LFA-DMV is able to provide these valuable services to the public. The National organization has nearly 300 chapters and support groups in 32 states.

The mission of The Lupus Foundation of America is to improve the diagnosis and treatment of lupus, support individuals and families affected by the disease, increase awareness of lupus among health professionals and the public, and find the causes and cure.

How much has been raised for the D.C. Walk to date? As of this weekend, it was a whopping $78,000! Can you believe it?

Despite Lupus supports the walk. Want to join me?

Monday, March 21, 2011

Despite Lupus makes its NOOK debut!

First, Despite Lupus arrived in print, available for purchase on this website and on Next, it appeared on Kindle. Now, the big DL is available on the NOOK - Despite Lupus is everywhere!

And don't think I'm ignoring all of you Mac users out there. Never fear - Despite Lupus for the iPad is right around the corner. You won't have to use that Kindle version much longer now!

For those of you anxious to snag a copy of Despite Lupus, the NOOKbook edition - feel free to click here. Just don't be surprised if you don't see the cover of my book front and center on the results page when you search for the book. For some reason, my cover art didn't upload as quickly as the actual eBook. (Techy wizard, I am not.) I'm sure it will be up momentarily - but rest assured, the eBook is available. And there's already a review to prove it!

Enjoy and thanks!

Friday, March 11, 2011

Woohoo! Benlysta's approved!

After more than 52 years, the FDA has approved a new drug to treat lupus, a drug that is, in fact, the first drug EVER to be specifically developed to treat the disease. What a milestone!

On Wednesday, March 9th, the FDA approved Benlysta for the treatment of systemic lupus. The drug came out of Human Genome Sciences, Inc., which is located right here in Rockville, Maryland. I had the pleasure of passing on a copy of my book to one of the doctors working on the Benlysta team at HGSI. Maybe I should get a few more copies in circulation among other pharmaceutical companies to provide the same motivation!

Looks like the drug is going to be in the hands of doctors and patients by the end of the month. In the meantime, here are some commonly asked questions about the drug. Read up now so you'll be informed when the drug comes a-calling!

(For a complete list of FAQ, check out this link to the Lupus Foundation of America. They cover everything!)

BENLYSTA is a human monoclonal antibody, which is a type of protein made in the laboratory that is developed to find and attach to only one type of substance in the body.

How does BENLYSTA work?
BENLYSTA is a human monoclonal antibody that specifically recognizes and blocks the biological activity of B-lymphocyte stimulator, or BLyS® (pronounced bliss), a naturally occurring protein which was discovered by scientists at Human Genome Sciences (HGS). Elevated levels of BLyS prolong the survival of B cells which can contribute to the production of autoantibodies – antibodies that target the body’s own tissues. Studies have shown that BENLYSTA can reduce autoantibody levels and help control autoimmune disease activity.

What does an FDA approval of BENLYSTA mean for people with lupus?
BENLYSTA represents a breakthrough in the treatment of lupus. BENLYSTA is the first drug approved to treat lupus in more than 50 years AND is the first drug developed specifically for lupus since the disease was discovered more than a century ago! Successful treatment of lupus will require an arsenal of safe, effective, and tolerable treatments. The approval of BENLYSTA is a significant first step toward reaching that goal.

What makes BENLYSTA different from other lupus treatments?
BENLYSTA is the FIRST FDA-approved medication specifically designed for the treatment of lupus. BENLYSTA targets specific immune cells, rather than the blanket approach of other therapies which suppress the entire immune system. Currently approved medications for lupus are borrowed from other diseases and conditions; other treatments are used off-label, which means they were never approved by the FDA for lupus. Many of these treatments have serious and devastating side effects.

These drugs include high doses of steroids, antimalarial medications, immunosupressive drugs, and organ-rejection drugs.

Who should take BENLYSTA? Will it work for everyone?
Each person with lupus is unique, and BENLYSTA will not be an option for everyone. You will need to discuss with your doctor if BENLYSTA may be an appropriate treatment option for you.

BENLYSTA is approved for the treatment of adult patients with active, autoantibody-positive systemic lupus erythematosus (SLE) who are receiving standard therapy.

The label for BENLYSTA includes the following limitations of use: The efficacy of BENLYSTA has not been evaluated in patients with severe active lupus nephritis or severe active central nervous system lupus, and has not been studied in combination with other biologics or intravenous cyclophosphamide. Use of BENLYSTA is therefore not recommended in these situations. Nor has BENLYSTA been approved for use in children. More clinical studies are needed.

What side effects have been found with BENLYSTA?
The most commonly reported adverse reactions with BENLYSTA were nausea, diarrhea, pyrexia, nasopharyngitis, bronchitis, insomnia, pain in extremity, depression, migraine, and pharyngitis.

How is BENLYSTA administered?
BENLYSTA is administered through an IV (intravenous) infusion directly into the vein.

How much does BENLYSTA cost?
We understand that there are going to be many questions, particularly around the affordability and accessibly of BENLYSTA, and the LFA will continue to address these important issues, and provide information as it is available.

Why has it taken so long to find a treatment for lupus?
Lupus is a complex disease. It can affect multiple organ systems and symptoms can range in severity from one day to the next. Also, lupus affects each person differently, with varying responses to treatment. The complexity and heterogeneity of the disease presents challenges in evaluating potential new therapies. With each research study, regardless of the outcome, there are new discoveries that help pave the way for new therapies.

Wednesday, March 9, 2011

Who knew about lupus? I sure didn't!

Guess what fun fact I just learned? Q-tips aren't supposed to be flushed down the toilet.

That's right - I had no idea those cottony little sticks could wreak so much havoc in the inner sanctums of the toilet bowl. Thankfully, it wasn't a plumbing issue that turned me on to this fact - just an older sister who gasped in horror as she saw me toss one into the toilet a few days ago. I don't know how or why I'd never learned proper Q-tip disposal techniques growing up, but somehow I'd missed the tutorial. Thank goodness Katie enlightened me. (What are older sisters for, if not to set us on the path of toilet bowl bliss ?)

I'm always amazed when I learn little facts like this - tidbits that it seems everyone knows but me (and Johnny). And based upon the 159,000 results I got when I googled it, it seems like flushing the ole' Q-tip gets plenty of air time. Apparently, it's quite the topic of conversation. Who knew I was missing out?

Interested to hear another tidbit that somehow passed me by during the past 35 years? I never knew until Deirdre was about 9 months old that baby bottles come with three (sometimes four) different nipple sizes that you are supposed to change throughout that first year of the baby's life.

Really? You are?

I had no idea that this was the case until one of Deirdre's bottles got mixed up with her cousin's of the same age. Her cousin, of course, was on to size #3...and I still had Deirdre using #1's. And no - she wasn't sucking the bottle so hard that she turned blue when she ate, nor were her lips permanently puckered, thank you very much. In fact, she seemed quite content using the same size nipple she did when she came home from the hospital. That said, she did seem to adjust quite well when I swapped out the nipples, downing a bottle within a few minutes, rather than the 15 minutes it was taking her. (Hey - I thought it was nice together-time.)

The fact is - there are normal, everyday things that occur in this world that you really don't know until someone tells you. Maybe q-tip and bottle etiquette aren't on your list of "a-ha's", but I bet there is something.

For me, there was another big "something" that I didn't know about - and that was what it was like to live with lupus. Heck - I didn't even know what lupus really was. And from what I hear from lupites around the world, that's pretty typical. One day, we don't even know what the disease is, and the next day, we find out that we have it, it's chronic, and we're going to have learn to deal with it for the rest of our lives.

And learning to deal with That's a tall order. And that's why I wrote my book, and why I keep this blog. I want the shock factor of living with lupus to be minimized. I want people to know that yes, your life will change with lupus, and yes, it can really stink to make those adjustments in order to accommodate your illness, but living with lupus is manageable. It requires a strategy, and some patience, and perhaps a little creativity and out-of-the box thinking. But manageable? Oh yeah. Without a doubt.

As manageable as remembering not to flush your Q-tips? Well, now...that's debatable.

Monday, March 7, 2011

Living well is, well, addictive

Remember my "X"? The attempt to finish a post before 10pm the night before it's published? Well - it's working. And I'm addicted.

Avoiding that mad dash has been great - I no longer feel the illumnation of the clock boring a hole in me as I finish up the last few sentences of a post. There's no end-of-day fogginess to contend with, no "gotta rush so I can get to bed" nonesense. It seems that working on a post earlier than later is proving to be a fabulous thing...and I should have known it would be.

It forces me to strategize, to plan things in advance, so that I'm not waiting until the last minute to pound out something that I can post. I've even avoided working on a post the entire day before it's posted...I just like the leisurely aspect of writing up something two or more days in advance and then just letting it sit. And no doubt this has all been great for my disease...lupus loves to feed on last-minute stress and anxiety, of which there has been very little. Yes, things in the land of Despite Lupus are calm and serene at present, and it may be that this lifetime procrastinator has been converted. Let's hope so!

(Okay - calm and serene might be a little much, given the two wee ones I live with, but you get the point.)

This idea of "sauntering: through the week, if you will, rather than rushing to make things happen at the last minute, reminds me of a quote I cited in my book. Years ago, I ran across this quote by Sandra Felton, author of "How Not to be a Messie". She says:

"To make Sunday satisfying, Saturday has to slow down.
To slow Saturday down, we have to control the weekdays.
We have to force them to march slowly in a more stately
manner so they won’t lump up at the end. "

Here's to a cool, calm and collected week, and to forcing lupus to take a back seat. Hey - maybe she'll just curl up back there and take a nap. It would be nice not to hear from her for awhile, wouldn't it?

Friday, March 4, 2011

Telling time has never been my strong suit

A few months ago, I was visiting with my in-laws. We were making plans for the day, and I mentioned that my only "to-do" was to take a nap around 2:45pm later that day. That would give me plenty of time to fit in our lunch plans, while ensuring that I had a good nap before we headed out for an early dinner that evening. Everyone agreed, and we went on about our morning.

Lunch came and went, and the clock was nearing 2:30pm. Everybody noted the time, and said, almost in unison, "Okay, Sara. Why don't you go on up to bed? We'll finish cleaning up, visiting, etc, etc, etc."

Well, you know what I said? I looked at my watch, saw that it was only 2:32 pm, and said, "Oh no, guys. I'm not taking a nap until 2:45. I have plenty of time." God forbid I start a nap even one second earlier than planned, right? Of course, 2:45pm flew by, and before I knew it, it was 3pm, and I still wasn't napping.

And so it goes - just another day in the life of a determined, stubborn lupus patient. You know how it is - we try and assert ourselves against the disease. We make every attempt to show her who's boss by not giving in before we're good and ready. But when we do stuff like that...eek out the last few minutes of the oh-so-precious time we have before a nap...who loses? Lupus? I don't think so!

The only people who lose out are the lupites! Pushing our limits - whether it's skimping on rest, running too many errands, or taking on more than we can handle - is futile. The goal can't be to one-up the disease. The goal must be to stay one step ahead of the disease. And if that means napping a few minutes earlier or longer than planned, so be it. Say I get a few extra winks during that 15 minutes. At the end of the day - am I going to kick myself for missing out on those few minutes of clean up and visiting time? Or am I going to be armed and ready to have a rockin' good time that night at dinner?

Yeah. That's what I thought.

Now do what you need to do to arm yourself for a good, pain-free deserve it!

Wednesday, March 2, 2011

Lupus DOES make me different

If you ask my mom what I was like as a baby, she'd say, "Sara? She put us on a schedule. She told us when she wanted to eat, when she wanted to sleep...", and she'd be making this chopping motion with her hand the whole time she was saying it. (It's true, isn't it, Mom?)

So my parents can't be TOO surprised, when, 35 years later, I'm still trying to tell them what to do, or how to think, or what not to think, or what not to do.

(A quick aside - Deirdre and I went to the playground recently with my sister and her son, and met another little girl and her grandfather. We were talking about girls being more assertive than boys at this age (2 years old+), and I made the comment that, "some of us stayed bossy longer than others." Admitting it is half the battle, right?)

But back to my parents.

I was expecting company last week. I thought I had scheduled the house cleaners to come the day before my friends were to visit, but for various reasons (primarily a mix-up of dates on my part), the cleaners didn't make it. (They did, but not on the day I was expecting the day they did come, we weren't available to let them clean.)

So I resigned that I would just have to do the cleaning myself (Johnny was out of town during this episode), and I tried my best to spread the tasks out over the course of two days, so that I wouldn't get too tuckered out. After the end of day one, Deirdre and I happened to skype my mom and dad, and I was catching them up on my mix-up with the cleaners.

They, of course, jumped at the opportunity to tell me not to overdo. Simply make my bed, my mom said, my guests would understand. My dad agreed, reminding me that it wasn't the clean house my guests were coming to see.

Well, being the stubborn, driven young (or not so young) lady that I am, I jumped at the chance to fight back - determined not to let lupus make me feel like an exception. Again.

To their kind words, I spat back , "Just for once, can you not think of me as your daughter, or as someone who has lupus? Just think of me as someone who's expecting guests, and who wants her house to be neat and tidy when those guests arrive. That's not too much to ask, is it?!"

There. I told them. Or did I?

I mean...I am their daughter, aren't I? Always have been and always will be. How can I expect them to suddenly think of me as anything else?

And as for the whole lupus thing. Well - I do have lupus, don't I? And whether I like it or not, that does change things, particularly when it applies to stressing myself out or working like a dog to make sure my house is spic and span.

Sometimes it makes me mad that my mom and dad wouldn't try the same thing with my sister. The subject of doing too much or overexerting herself just wouldn't come up. In fact, they'd probably tell her to be sure not to miss the laundry room. The same rules just don't apply to my sister.

But then again, I'm not my sister, am I?

(Right now, my parents are probably saying, "Yes, thank goodness we don't have two of you to contend with!")

So to my poor parents - I say, thanks, once again, for a lesson is not doing too much for the sake of my health. And to my daughters, Deirdre and Bernadette, I say I can only hope that you will love your mom and dad half as much as I love mine.

I wonder if that's even possible?